Dr in Dana Farber for Multiple Myeloma?

eric · 12-11-2008, 06:07 AM

Was wondering if anyone knew of a doc they could recommend? My Aunt has just been diagnosed and I'd like her to get a 2nd opinion at a major facility. She lives in CT and doesn't want to go to Sloan.

Thank you,
Eric

Believe51 · 12-11-2008, 07:38 AM

Eric, I will try to work on that for her, just a matter of getting ahold of a contact there. If I can be of assistance at the time of her appointment (Ed needs Gamma again), I will meet her if she needs company. I'll be thinking of her today on my quest. This is a great place for a second opinion, Ed and I love them there. Bet you someone responds with a doctor before I do, knowing this great family of ours. Love em all!! Talk very soon.>>Believe51

Believe51 · 12-11-2008, 11:53 AM

Hey buddy, have not heard back with a specific doctor yet, but want to give you what I have in my records:

Center For Hematologic Oncology

"The Jerome Lipper Center For Mutiple Myeloma" (this is the specialty center)
at:
Dana Farber/Brigham & Womens Cancer Center

Contact: Hematologic Oncology

New Patient #
(617) 632-5138

Registered Patient#
(617) 632-6140

Wish I remembered her doctor's name but being around so much radiation exposure has deemed me senseless...LOL!>>Believe51

eric · 12-11-2008, 08:30 PM

Believe51. Thanks so much for your consideration and efforts. You're wonderful! Thank you

flynny · 12-11-2008, 09:43 PM

Hi Eric,

I go to Dana Farber and I am very happy with the treatment facility there, as well as the doctors, nurses, and staff. They are just incredible. My doctor is Dr. Nancy Lin. I wish I knew a doctor who worked specifically to which you are asking. My thoughts are with you and if there is anything I can do, please do not hesitate to ask.

Believe51 · 12-12-2008, 06:34 AM

We once seen Dr. Lin for a second opinion on treatment regime options and a review. How long have you been seeing her?>>Believe51

Believe51 · 12-12-2008, 10:01 AM

If I was to contact them at Dana Farber and get directed to:

Ken Anderson (Director)
or
Paul Richardson (Clinical Director)

Good luck with all your endeavors. Wish I had a return call from my friend, I am really starting to get worried about her!! Uggh! I'll keep you both in prayers!!>>Believe51

flynny · 12-13-2008, 11:02 PM

Believe51,

Sorry for the delay in replying to you. We were out of power from early Friday morning until this evening. At least we were warm by our wood stove.

Long story short my mother was seeing Dr. Lin from April 2007 (this is when she was dx with mets to the brain). In January 2007 I found a lump, but was "blown off" by my primary doc. Anyway, Dr. Lin became my doctor once I was dx this year. What were your thoughts of her?

Believe51 · 12-16-2008, 10:35 AM

Although I do not like to say a bad word about anyone I must say that I was not overly impressed, but this is not a rather fair assumption. I know doctors are busy there trying to save lives but she read his complete complicated journey in 5 minutes, gave a quick physical and made her judgements (which is why we were there). We felt rushed and cheated that day. Hope I am not being too critical since we really did like her. We already had a treatment plan in the back of our heads and when we went there and Dr Lin basically agreed with what we already felt was the direction we needed to head. She discussed the other possible options that we could explore and those too were in the back of our minds. It is not fair for me to judge her fully since we do not have her in our journey; we did enjoy her personality and spirit. Generally speaking we did like her as a whole. She is a very educated woman who focuses alot of her time to mets and clinical trials at Dana Faber. All in all, we went there for a second opinion about our next course of action and she did just that, rushed or not. Ed and I will be back and he will be seeing Dr Winer, which was the doctor who originally was supposed to meet with us.

It pleases me to see that she is your doctor, I hope you are happy with her. Her education and demeanor, I feel is for the best in your journey. She will guide you assertively to where you need to be. Hang tough Sarah. And every time we go there we will be thinking of you!! Smiling>>Believe51

karenfritzohare · 12-25-2008, 06:27 PM

Sorry, I just saw this.
My husband is just finishing 6 rounds of chemo. at a local hospital for Multiple Myeloma.
We have met with Dr. Robert Schlossman at Dana Farber and he will be recieving a stem cell transplant soon.
Dr.'s Richardson and Anderson are the gurus of MM and still at DF, but I think if you google Dr. Schlossman you will see they are all connected.
Multiple Myeloma is even scarier than breast cancer.
I am praying for you and yours.
Karen

eric · 12-25-2008, 08:06 PM

Thank you Karen.

karenfritzohare · 12-26-2008, 08:12 AM

You are most welcome.
Please know that my husband has breezed through the chemo.
Believe it or not thalidomide is the new addition to treating MM. With the stem cell transplants and new drugs there are great strides being made for MM patients.
Please don't look at the statistics for the past 10 years. They are breaking new ground and the odds are better EVERY DAY!!
Good Luck to you.

Believe51 · 12-26-2008, 09:27 AM

Karen, thank you also from me. This is more scary than breast cancer is and I am so pleased to see the groundbreaking they are making. My girlfriend has been sick for some time nowTell your Dear Husband that I have said kudos to him for his completion of chemo. Keep fighting the good fight, both of you. May 2009 be your best year ever, may you receive the health and time that you both are fighting for!>>Believe51

Janelle · 12-27-2008, 06:53 PM

Eric,
I'm so sorry to hear about your aunt's diagnosis. I have a friend in Los Angeles who is a 20 year breast cancer survivor (she was diagnosed at age 30 with breast cancer) and was diagnosed at age 37 with multiple myeloma.

My friend's doctor is in Los Angeles but he specializes in multiple myeloma. His name is Dr. James Berenson. I've met with Dr. Berenson personally as I went to an appt with my friend after we thought she came out of remission recently (false alarm by the way). She's been in remission for 13 years! (Sadly, Dr. Berenson told me he suspects that my friend's silicone implants triggered her multiple myeloma which was hard to hear for her and me since I also have silicone implants too).

Also, I have a good friend in NYC whose father was treated for multiple myeloma. Her dad passed away of a heart attack but my friend joined "Team Continuum" and ran the NYC marathon to raise money for blood cancer patients. I think you should check out this link: www.teamcontinuum.net. Check out the board of directors and look up Paul, the team leader. Paul Nicholls started the team and is a multiple myeloma survivor. My friend, Lauren, told me he will talk to anyone about multiple myeloma when I reached out to her for help for my other friend, Cheryl. The board of directors also contains names of doctors not affliliated with Sloan. Please PM me if you want more info.

Best,
Janelle

karenfritzohare · 02-10-2009, 09:22 PM

Just a little update.
I do hope you were able to find a doctor at Dana Farber you like. We are feeling very good about Dr. Schlossman and his team.
My husband did his Hickman catheter implant yesterday and stem cell harvest today at DF. They wanted 5 million stem cells for his transplant. They got 19.62 million!
Keep your fingers crossed for us next week.

Love and hope to all of you.
K

Janelle · 02-10-2009, 10:17 PM

Best wishes, Karen for your husband's successful treatment. He sounds like he is off to an excellent start to recovery.

Believe51 · 02-11-2009, 10:25 AM

Karen, fingers and toes crossed. More prayers coming for hubby and yourself. I will be following his journey and progress; what a great start for him so far. Stay well!>>Believe51

Darlene Denise · 02-11-2009, 03:47 PM

Hi Sarah: Is your Mom still in the care of Dr Lin and if so, how has her treatment gone?

I saw Dr Lin in November 08 for a opinion after my brain mets dx and Cyberknife treatment. She was very nice and thoughtful about her advice. She was not on the same page as me about the use of WBR nor my choice to treat my lesions with Cyberknife, but she gave me all of her best advice and we spent about an hour together. She was respectful of my choices and agreed to continue to follow my care and help me with future decsions, if the need arises.

As a matter of fact, I want to attend the MCBC at DF in May, where she will be speaking. I have an appointment to see her the Monday following the conference, but having difficulty finding affordable lodging that week-end. So not sure if I will make it. Will you be attending?

You look awesome in that scarf!! Hollywood really needs to feature Cancer Couture, don't you think?

Take care...Darlene in Virginia Beach

flynny · 02-16-2009, 09:27 AM

Hi Darlene,

Sorry it has taken me so long to respond, but we are having a lot of problems with our new service (Fairpoint Comm), so I am typing from our store.

My mother passed away on June 17, 2008. I was dx on February 7, 2008 and surgery on 2/22/08. I am coming up on my year anniversary (2/22/09).

Due to how I knew Dr. Lin so well, I decided to stay with her once I was diagnosed.

I would love to chat with you more regarding your meeting with her. I can be reached on my cell at 603-325-5090.

I plan on attending the meeting in May. The Longwood Inn is $159, but you could call the social worker and see if you can get a better rate. The DFCI offsets the rate for anyone who is undergoing treatment. There are a few others around as well. I can give you the # of a social worker there.

THank you for the compliment. It is actually a hat with sparkles all over it. I look forward to talking to you!

karenfritzohare · 04-12-2010, 07:44 PM

It has been a very long year. My husband died at Dana Farber January 21, 2010. His Multiple Myeloma was in remission after the stem cell transplant last February. We thought things wer going great until September. It took so long to diagnose his new cancer. Angioimmunoblastic t cell lymphoma.
Imagine a new primary 6months after transplant. With my breast cancer this was 3 cancers in 3 years in one home.
Unreal.